In general, palliative care patients who received only AAPV (Group A) had a longer survival time than patients who received also stationary palliative care or SAPV (Group B). This may indicate that patients in Group A had less severe symptoms or a better medical condition. In contrast, patients in Group B may have had a worse medical condition that required a higher level of care with specialized palliative care. The patients in Group B more often had a diagnose of cancer and the survival rate after 12 months of follow-up was lower than the patients in Group A. In the Kaplan-Meier survival curves, difference between the two groups was statistically significant. The curves also reveal how many patients died shortly after starting palliative care. The survival time of patients who died soon after the beginning of palliative care did not differ between the two groups. About a quarter of the patients in both groups died within two weeks after starting palliative care. In other words, the patients received palliative care only shortly before their death. This could mean that palliative care started too late for some of these patients.
Palliative care aims to improve the quality of life of patients and their families through the prevention of and relief from suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems [1]. Palliative care offers patients support so that they can live as actively as possible with a decent quality of life until their death. Therefore, palliative care should start as early as necessary rather than just shortly before death. Studies suggest that timely palliative care can improve the quality of life of patients with advanced stage disease [14–18]. Early referral to palliative care for patients can facilitate appropriate monitoring and treatment of symptoms, longitudinal psychosocial support, counselling, and a gradual transition of care [14–16]. Besides, early palliative care can provide further benefits to the health care system by ameliorating the caregiver distress and health care costs associated with aggressive end-of-life care [17, 18].
Primary care providers, such as GPs, provide most palliative care in Germany. GPs play a key role in determining the need for palliative care and requesting a palliative care consultation, as well as coordinating referrals to palliative care specialists. GPs play an important role in coordinating early palliative care measures within the primary care structure. Although many GPs consider palliative care an essential part of their work, knowledge of palliative care and the structures of specialized palliative care were limited among GPs due to a lack of qualifications and experience in palliative care [19–21]. The present data, however, do not provide any information on the quality of palliative care provided by GPs.
The present study showed that about two-thirds of palliative care patients received only general ambulatory palliative care provided by GPs and no stationary palliative care or SAPV services (Group A). One- third of them received only one day of AAPV. The survival time of these patients (Group A1) was shorter than that of patients receiving more than one day of AAPV (Group A2). In contrast to Group A2, in which half of the patients died within seven months of starting AAPV, half of the patients in Group A1 died already within one month. Moreover, one-third of the patients in Group A1 died within one week after their first palliative care measure. This indicates a rather late start of palliative care for this subgroup of patients who received only AAPV. However, during the study period, a large proportion of patients in Group A1 survived after starting palliative care and received no further palliative care. This may be due either to the fact that no further palliative care was required for the patients or that the patients’ initial assessment as palliative care patients by GPs was inadequate. It is a major challenge for GPs to ensure the assessment of patients who need AAPV or are to be referred to SAPV.
In one federal state in Germany (North Rhine-Westphalia), this problem is addressed by an innovative design of palliative care, whereby the basic concept is consciously designed to integrate AAPV and SAPV structures in one contract. Palliative care is based on cooperation between palliative physicians and GPs. Palliative physicians and coordinators are organized in this region at a regional level in palliative medicine consultation services. The coordinators of these services organize the cooperation between GPs, clinics, nursing homes as well as other facilities and the palliative physicians [22, 23]. Furthermore, since 2017, a new reimbursement code for physicians "specially qualified and coordinated palliative care" was introduced in Germany. The new reimbursement code is intended to facilitate transitions between curative treatment, AAPV and SAPV [24].
It should be taken into account that the claims data do not provide any information on palliative care provided by ambulatory nursing services, which probably also make an important contribution to the provision of general ambulatory palliative care. However, little is known about the nature and extent of palliative care delivered by nursing services. Further research on this issue is needed.
Strengths and limitations
A strength of the study lies in the health insurance data, which includes both stationary and ambulatory data. This data allow to study the course of patients through different sectors of the health care system. However, a limitation of claims data is that they were collected for reimbursement purposes and may not fully and accurately reflect the individual health situation of the patients. Further limitations are that the patient's home situation is not reflected and the need for palliative care, especially AAPV, cannot be determined. Although a large part of the population in the study region is insured by AOK-Nordost, the results of the analysis may not fully extent to the entire population of palliative care patients.